Sucrose Challenge Test.

[Charlie Arnold]

Meg had this yesterday. Interesting morning.

Big question, why do they only do breath testing not bloods at same time? I know you don't want to stress kids out but surely if you putting through drinking that much of what may be harmful you need to see what it is doing to whole body. Or even test the urine.

I don't think her breath changed, they seem to have a new machine now and they breath into a bag and then dissappear off with it into another room, but the results are read instantly.

But this is how the morning went:
9am arrived having had no breakfast, very calm, bit tired as up at 5 am as her dog had puppies that morning (so I was absolutely shattered).
9.30 drank sucrose solution. Played with her ipad, chatted, sitting happily, watched telly.
10.30 ish, went for a wee, said she had a headache. (apparently she had had one since first thing, but interesting she only mentioned it now). Started getting fidgety, rocking backwards and forwards, chewing her hair, fiddling with anything she could get her hands on, up and down off chair, knocking head against wall behind her gently. Getting very giggly and silly.
11.30 did another wee (rarely has one in the mornings), started to get very lethargic, rolling about on my lap, didn't want to watch telly, didn't want to read a book, didn't want to do anything, started whining alot.
12.00 Last breath test, went off to get lunch, ate big plateful.

All afternoon did alot more wees, very lively but this may have been due to excitement of pups so not sure. Went to school this am but starting to get runny nose and looked very pale. wonder if would have gone to school if didn't have pups to tell everyone about, will see how she does later. Gas will be the next thing I reckon.

But what is that telling us. I made sure I told them about the behaviour changes and they wrote it down,and did see a bit of it. I have written it down too and will make sure I tell them on Monday when we see the consultant. So even if the breath doesn't show any changes surely the behaviour shows a reaction?
In the evening I thought I would do a urine dip test, but unfortunately the strips have got contaminated and all showed very odd readings, so I got another strip out and noticed the colour changes, think Meg must have been fiddling with them, so that was that.....................

So we wait for Monday.......................

[FMmom]

Ugh, I hate that waiting, especially since it's so unnecessary. If they know the results, I wish they'd just say it. The girl doing Kaelin's test did everything but tell us, though... After Kaelin's last reading, I said to Kaelin "how about if we go get some lunch, something protein-ish with no sugar" and the technician said "absolutely, try not to eat any sugar, that's a GREAT plan." She also told me (several times) that the report can take up to 10 days, however, the raw data will be posted in the afternoon. Kaelin's doctor will be able to access it, so give him a call later. Actually, it will be posted by 1:00 so you can call him after that. Or call him at 1:00 and tell him to look for it. Really, don't wait the 10 days, call him just as soon as you get home and make him look at it online." So, um, are you trying to tell me something? She said she can't tell me anything -- but really, call your doctor right away.

How did Meg do on the Fructose breath test? Were there substantial differences in how she handled it? Kaelin barely got the fructose solution down -- she stopped halfway and said she was about to throw up. I let her steady herself, then asked her to finish it and she was able to do so. She had to poop after 15 minutes and by 30 minutes her poop had turned to liquid. For the next four days (and probably longer than that -- but four days later is when I was able to get a hold of the gastro doc's assistant and said regardless of the test results, Kaelin is not doing well) Kaelin couldn't eat more than a couple of bites of food before having to sprint to the bathroom. She lost almost four pounds that week. Yikes.

The weird thing is, I don't remember Kaelin having any behavioral effects from the solution. Normally, kids taking breath tests get to roam around in between the breathing parts but because Kaelin has CF, she wasn't allowed to leave. She got to lie down and watch videos -- and she didn't get at all fidgety or talkative or anything. Now, she's always a bit anxious when we're in some new situation so that could account for some of the calmness -- but we were in the room by ourselves, with the technician coming in every half hour to do the test. I'd think even without fructose, Kaelin would be getting hyper after three hours of lying still. Yeesh.

Keep us posted -- I'm curious what this all means... You can't call for results before Monday? How very frustrating!

[Charlie Arnold]

Meg didn't really feel ill when she had the fructose test but later that day she started to feel sick, had runny poos for days and was off her food for about a week. But all the time she was at the hospital that morning she was fine. However her reading - don't know the scale reading but anything over 10 is positive and hers went up to 124, bearing in mind the graph finishes at 90. But the reaction was certainly delayed, when it went up to 65 they started to panic but she was quite happy playing............................

We shall see, no consultant in until then. I shall take notes until then, came out of school very pale and stroppy.

[Charlie Arnold]

I know the one you mean Lucky, its the one they do for diabetes, I thought that is what they were going to do a year ago but they did the glucose breath test. When she had that they didn't do bloods at the same time again surprised me. That time, after half an hour meg went off her rocker........................ giggly, silly, rude, falling about, like she was drunk. Then sang at the top of her voice all the way home what I can only describe as like "pub songs"........ At one point I thought she was going to try and open the car door on the motorway, it was quite a scary drive home................................................. and that test came back negative for SIBO but something was obviously happening.

I do wonder how many kids have these tests, no positive change in breath but other signs that arent' noticed that they are reacting..............

I'm really not sure why they decided to do the sucrose challenge. The registrar asked me why they were doing it so I said I assumed they were looking into CSID, and he asked me what that was......................... so your guess is as good as mine. I need another long chat with the consultant on Monday I think.....................

Not sure about 2 types, we shall see, have posted the reaction on the CSID site to see if it rings any bells with anything.

Update on reaction the gas started yesterday pm and she had diarrhea, very tired and moody this morning. oh and earache started. Think the only thing getting her into school at the moment is news to tell about the puppies.

[FMmom]

Doh -- somewhere between my brain and my fingers the phrase "When Kaelin took the Hydrogen Breath Test for FM..." was lost.

No, she's never taken any other breath test so I don't have any way of making a comparison. I just remember being so mystified that this kid who goes insane whenever she has sugar remained so calm during testing. Kaelin never commented on pain (it's all she's ever known) and because of the pancreatic insufficiency, I always assumed that caused her constipation/diarrhea. The only symptom I saw (and saw dramatically) was the behavioral stuff. None of which happened during the testing so I totally expected the test to come back negative. I was afraid that her numbers would be exactly 20 points above her baseline so that it was open to interpretation. I never expected that her numbers would range from 180 to 230. Yikes. And it confused me all the more about why there were no behavioral changes.

Fruit has always been Kaelin's favorite food. She'd turn down all offers of candy, ice cream or cake, asking if she could just have fruit instead. I know I stopped giving her applesauce, but there is sugar in there so I certainly never associated her behavior with the apple part of it. I never mentioned fruit; not in the notes that I kept, not in the conversations with gastro doc. That's why, even when ordering the test, he didn't believe that Kaelin could have FM. She surprised us all.

I have no idea what to think about this Sucraid. Kaelin says her stomach hurts a lot. Yesterday was another complete disaster from beginning to end. She woke up feeling hyper and never stopped. Could it still have been from the protein bar? I've always read that a reaction could last for a couple of days, but with Kaelin it's always been an instant reaction and it goes away after she improves her diet. So I don't know. All I know is that any type of sugar makes her nuts.

I've tried googling "glucose test for digestion" and I'm not finding anything beyond a glucose tolerance test. There is something very funky about Kaelin and sugar and I'd love to solve it, nae, I'm desperate to solve it. I've asked one doctor (not her regular doctors) that since we know that alcohol can have such a corrosive effect of the pancreas, is it possible that since Kaelin's birth mother was an alcoholic, that could damage Kaelin's pancreas in utero? The only response I got was that it was a very interesting question.

Diabetes is a pancreatic condition -- Kaelin cannot handle sugar and she can't handle being hungry (and yesterday in all of her wild antics, she just kept telling me how hungry she was. I couldn't give her enough food to eat. And she lost weight anyway...) Sugar is just poison for her. I hope that the results of the Sucraid trial will at least lead her doctors to consider doing the 13-C sucrose test.

But hey -- at least you cleared up the big mystery of why Kaelin seemed so calm during the testing. Every time a doctor mentions that there could be a false-positive, I think it couldn't be since her numbers were so high, yet it must be because she didn't fall apart. And now I understand how she could have a positive result and good behavior.

[Charlie Arnold]

I found this information out when looking into diagnosis of CSID, mainly because I got the impression they didn't know anything about it at the hospital. I need to go armed with every bit of info I can so we don't get fobbed off. Got to wait another week now, they have just changed the appointment to the following Tues..........

Sucrose breath hydrogen tests have been extensively validated in children with CSID and normal controls.17 The test is based upon the fact that in CSID, unabsorbed sucrose is converted in the colon to methane, carbon dioxide, and hydrogen gases by bacteria. Hydrogen gas is absorbed into the bloodstream and eliminated via expired air. Thus, following a loading dose of sucrose, the amount of hydrogen in expired air is proportional to its intraluminal production.17 Among sucrose-tolerant subjects, administration of a 1.0 to 2.0 g/kg oral sucrose load is associated with a change in breath hydrogen of <10 parts per million. Among patients with CSID, the same load is associated with an elevation in breath hydrogen exceeding 20 parts per million between 90 and 180 minutes after ingestion of sucrose.3 However, it must be noted that some patients are so-called “non-hydrogen producers.” The prevalence of non-hydrogen producers has been estimated at between 2% to 20%.18-20 These data suggest that the breath hydrogen test is an unreliable diagnostic parameter for CSID.

www.sucraid.net/for-physicians


Not sure on the hydrogen production as the fructose test was so dramatic, but that was 4 years ago and she has been on very carefully managed diet since to cause least abdominal symptoms so maybe not producing it now?

[Charlie Arnold]

wow, got a report through today from hospital...................... after only 3 days....................... normally takes months.................

But got the best typing error ever, gave me a good laugh anyway.......................

In the results of the test it says highest reading 2ppm H2 (normal range 0 - 20 ppmH2) but one hour into test patient's behaviour started to change and she became more active - hyperactive and ERROTIC more than usual...............................

I burst out laughing and had to think quickly on my feet to explain what I was finding funny to meg and her school friend..........

Now as to diagnosis: they were testing for CSID but have they diagnosed it, I wonder if they might as it says
Primary diagnosis: Admission for procedure
Secondary diagnosis: congenital sucrase-isomaltase deficiency

Then further down after the typing error and Investigation results it says
Co-morbidities and complications:
Congenital Sucrose - Isomaltase Deficiency

The form is very confusing and lots of bits typed in wrong section so will wait for this delayed appointment with baited breath but does this mean we are finally at an answer???

[FMmom]

Is it possible that the highest reading was another typo? I don't see how they can interpret a high of 2 as being positive for CSID...

Maybe the sucrose breath test is different than the other ones, but I'm not seeing anything that could lead to a diagnosis. On the hydrogen breath test, 20 above baseline would be positive. Someone on the FM forum said that FM could also be diagnosed if the first reading increased by 10.

Following a FODMAP diet shouldn't affect the test -- if anything, it helps the diagnosis... Then there is no doubt that any rise in the hydrogen or methane gas is produced by any malabsorption of the sugar solution.

From the literature I received before Kaelin's hydrogen breath test, it said that "symptoms can develop during the test, but they have little bearing on how the results are used." I don't know what symptoms they are referring to, so that may not pertain to behavioral changes. It also said that "symptoms developed over the next 12 or 26 hours have no association with fructose malabsorption." (That's why I was so weirded out about Kaelin's diarrhea -- it was occurring well beyond the 26 hours so if it didn't mean FM, then what was going on? But then again the onset of symptoms was 15 minutes, so maybe that passage didn't pertain to us... So confusing, it's all so confusing...)

Again, I have no information on the sucrose test so it's possible (probable and high likely) that I have no idea what I'm talking about.

What does "Primary Diagnosis: Admission for procedure" mean? It sounds like they were using those fields to say why you were there rather than what they found.

I just wonder if there is a typo on the results and it should read 20ppm H2 -- that would put Meg right on the top border and her behavioral changes may be enough for them to find she does indeed have CSID.

I'm sending good vibes and ehugs -- but I don't know what I wish for you, other than getting the answer you need. We're in the midst of looking at CSID as well, and there are days that I want a diagnosis so I know exactly what's wrong and can finally follow a plan. And then I look at that CSID eating plan and think dear god, please don't let Kaelin have this!

I know, I know -- if our kids have it, we need to know so that we can make all the necessary changes. The unknown is just awful -- I don't want to give Kaelin foods that aggravate her system, nor get angry with her for behavior she may not be able to control. On the flip side, I don't want to limit her foods so drastically unless there is compelling reasons -- like a clear diagnosis. (Kaelin's Sucraid trial is looking good so far, but I'm not using to to rule in or rule out CSID -- I'm looking for enough of a change that it justifies either the breath test or the endoscopy...)

So I guess what I'm saying is I hope you find resolution next Tuesday and whatever they say can finally give you the peace you deserve!


Best of luck!

[Charlie Arnold]

AAAAAAAAARRRRRRRRGGGGGGGGHHHHHHHHHHH

Incase you haven't twigged, I am not happy.

We went for our appointment today. Maybe I had too many high hopes. As I have already said this was changed from last week. They were running late for starters, never good when you have a child that doesn't like hospitals and strangers.

Eventually got into room.Instead of the senior male consultant sitting there that we usually see there is a younger female............ sorry she says I am covering for Dr ............ so let me just read back on her history................ So we go back over everything, and stress that she was not good on the low fodmap diet as it records she was better on it...................... but she was better on less wheat...................... Then i said about her being better on lactofree milk....................... so has she had a lactose challenge test. Yes, says I, but she insisted they hadn't done one as there was no record of it........................ But they did one just after the first fructose test........................... Maybe we need to do one of those.........................NO you've done one. What about the sucrase isomaltase test I ask............. she had one done 2 weeks ago. Oh, what an enzyme test, no a sucrose challenge, so not an enzyme test. No............................ well thats not for sucrase isomaltase then........................

I took a deep breath, she eventually found the sheet.............. Lucky I mentioned it then ............................. Oh that was negative................................ Count slowly to 10. But what about the behaviour changes................................. Hmmm, well they suggest a metabolic problem............................. so could it be CSID? Oh I don't think so says she, they usually get really bad diarhea literally running through them, well the 2 cases I have seen have.....................................

But she used to when she was younger, till we stopped fructose and sugars therefore decreasing the sucrose................... I had to repeat this several times.

So we went through the changes when she has something, the behaviour changes especially. Yes that sounds metabolic.............. so we are getting somewhere then................ So she suggests we do a lactose challenge but do bloods and urine test if she shows changes, but last lactose challenge she didn't change.................. but of course they have no record of that................. I asked why not do it with sucrose................ but that was negative she says..................... but it was the most dramatic on the behaviour changes so surely that is a better starting point for metabolic problems. She'll have a think and chat with the specialist and we will wait to hear............................. Meanwhile make an appointment for 6 months...................

Now I apologise to any guests that are medical but ***** ******* *************** ********* ********* *******..........

As a parent this is not good enough. I am an intelligent human being, obviously very rational..... well I like to think so but this is not a good way to carry on. This has been going on for 5 years now with them but 9 years for her. This has a huge effect on her life, her schooling, her sleeping, her well-being. So lets get serious. Why does it take so long to get any sense and why do they not read over the notes properly before seeing the child. I took a day off work again, she missed a day of school, we drive for over an hour to get there, then have an hours drive back, for what, to sit there and go over old ground without going any further forward. Well I suppose it is starting to make sense slowly but why oh why so slowly.............

I understand this is an unusual condition, I understand there are kids much sicker............ but this is still a child with a problem. I feel like putting her back on a normal diet that any kid would have and start all over again when she is sick. But could I do that to her, or even myself.

On a positive I suppose at least we are narrowing it down to a metabolic condition that is having a direct effect on her behaviour, therefore probably her brain function to, which explains everything else. But what do we do about it to improve things..........................

Watch this space.................. slowly........................ but don't hold your breath........................

[Charlie Arnold]

Had a better follow up with our general paediatrician, thank god she listens. She is going to liaise with the other hospital and find out what they are up to and should we get Megan to be reactive before testing anything else. So feel a little calmer.................. Sorry for the outburst, but feel better for the shout.................... Thanks guys.

[Charlie Arnold]

This is pasted from the CSID info site:

The research literature suggests that determination of stool pH may be a clue to diagnosis. It also indicates that about 1/3 of all CSID patients had a false negative hydrogen breath test for sucrose. It further indicates that disaccharidase determination is the key to a proper diagnosis of CSID. This is done by taking a small-bowel biopsy (a tissue sample) from various points within the duodenum (area just beyond the exit point of the stomach) and the proximal jejunum (upper portion of the small intestine) to determine the levels of existing enzymes present. Dr. William Treem has written a number of articles regarding this test, the procedure, and interpretation of the results, which may be helpful for primary care physicians (please refer to list of citations in the research portion of this website.)

So herein lies the problem, how accurate a test is the breath test. I suppose it can be used as an easy first step a bit like the genetic test for HFI, but one must be prepared to not give up at the first hurdle if you really feel it is a chance it is the solution. I shall give them another week then start hassling if I haven't heard anything.

[Charlie Arnold]

Good points Lucky. However I wonder if the sucrose reaction for a fructose malabsorber would be delayed as the sucrose has to be split first into glucose and fructose which would happen in the stomach? and small intestines? I need to read my old medical books and work out the timing. Would it then take several hours for the hydrogen to build up, by which time they stop anyway as they only do over 2 1/2 hours?

As for the change in tests, I think their argument is that kids improve over the years from FM, I suppose as their body and livers mature. But I think we all find that that isn't quite the picture, unless they have all been misdiagnosed.

I think alot more quesions need to be asked.

I'm not convinced how accurately these tests are done too which I will post under my bit about the hydrogen breath challenge test.

[LeoSath]

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